HIV-related lymphoma

Lymphoma is a cancer of the lymphatic system – part of the body’s immune system.  HIV affects the immune system and so can increase the risk of developing lymphoma.

In lymphoma, white blood cells called T-cell or B-cell lymphocytes become abnormal and begin to divide in an uncontrolled way. The first symptom is often a painless swelling in the neck, armpit or groin caused by a build-up of lymphocytes in the lymph nodes.

Your doctor will do tests and scans to diagnose lymphoma and find out its stage – how far it has spread. This helps them to plan your treatment.

Different types of lymphoma need different treatments. Most HIV-related lymphomas are fast-growing and need treatment immediately. This usually involves a combination of chemotherapy drugs, often given with a monoclonal antibody drug called rituximab. Treating the HIV with highly active antiretroviral therapy (HAART) is also an important part of treating the lymphoma. Your cancer doctors and HIV doctors will work together.

HIV-related lymphoma

Having HIV (human immunodeficiency virus) can increase the risk of developing lymphoma and affect the way lymphoma is treated. This information is about the diagnosis and treatment of HIV-related lymphoma.

This information should ideally be read with our general information about the type of lymphoma you have.

We hope this information answers your questions. If you have any further questions, you can ask your doctor or nurse at the hospital where you are being treated.


Lymphoma

Lymphoma is a cancer of the lymphatic system. The lymphatic system is part of the body’s immune system and helps us fight infection. It is made up of organs such as the bone marrow, thymus, spleen and lymph nodes (sometimes called lymph glands). These are connected by a network of tiny lymphatic vessels that contain lymph fluid. Lymphatic tissue can also be found in other organs, such as the lungs, stomach and skin.

Lymph is a colourless fluid that circulates through the lymphatic system. It contains cells known as lymphocytes. Lymphocytes are a type of white blood cell. They help the body fight infection and disease.

The lymphatic system
The lymphatic system

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View a large copy of the diagram of the lymphatic system.

There are lymph nodes all over the body. As lymph fluid flows through the lymph nodes, the nodes filter out anything the body doesn't need or is harmful. This includes bacteria, viruses, damaged cells and cancer cells.

There are two main types of lymphocytes, called B-cells and T-cells. Most lymphocytes start growing in the spongy material in the centre of our bones where blood cells are made (the bone marrow). B-cells mature in the bone marrow, while T-cells mature in the thymus gland behind the breast bone. When they're mature, both B-cells and T-cells help fight infections.

Lymphoma is a disease in which either B-cells or T-cells grow in an uncontrolled way.

There are two main types of lymphoma:

Although they're both types of lymphoma, Hodgkin and non-Hodgkin lymphomas are treated in different ways.


What is HIV-related lymphoma?

HIV lowers the numbers of T-cell lymphocytes called CD4 cells. Doctors call the number of CD4 cells in the blood the CD4 count. Having a low CD4 count makes people more prone to getting serious infections and some types of cancer, including lymphoma.

HIV treatment, called highly active antiretroviral therapy (HAART), reduces the risk of developing lymphoma. It also helps improve survival in people with HIV-related lymphomas.


Causes of lymphoma

Some types of lymphoma are more common in people who have lowered immunity due to conditions such as HIV.

Untreated HIV infection reduces the number of T-cells, which leads to more B-cells being made. In people with reduced immunity too many B-cells, being made too quickly, can develop into non-Hodgkin lymphoma. This is called B-cell non-Hodgkin lymphoma.

There are some other viruses which can also increase the risk of developing lymphoma. These viruses are common in people with HIV-related lymphoma:

  • the Epstein-Barr virus (EBV), which causes glandular fever
  • the human herpes virus type 8 (HHV-8, also called Kaposi’s sarcoma herpes virus).

Lymphomas themselves are not infectious and can’t be passed on.


Signs and symptoms of lymphoma

The first symptom is often a painless swelling in the neck, armpit or groin, caused by enlarged lymph nodes.

Other symptoms may include night sweats, unexplained high temperatures and weight loss. These are known as B symptoms.

Sometimes lymphoma causes specific symptoms according to where in the body it is. Lymphoma in the bowel may cause tummy pains, for example.


How lymphoma is diagnosed

Lymphomas are diagnosed by removing some tissue from the affected area and examining the cells under a microscope. This is called a biopsy. It’s usually a small operation and may be done under local or general anaesthetic.

You will also have blood tests, x-rays and body scans such as a CT or PET scan. We can send you more information on these. Other tests may also be done.

Lumbar puncture

This test checks for lymphoma cells in the central nervous system (CNS). The CNS is made up of your brain and spinal cord. The spinal cord and the brain are surrounded by a fluid called cerebrospinal fluid (CSF). In some types of lymphoma, the lymphoma cells may get into this fluid. Your doctor uses a local anaesthetic to numb the lower part of your back and then passes a needle gently into the spine. They then take a small sample of CSF to be checked for lymphoma cells.

A lumbar puncture is usually done as an outpatient and only takes a few minutes.

Bone marrow sample

A small sample of bone marrow is taken from the back of the hip bone (pelvis) or occasionally the breast bone (sternum). It’s sent to a laboratory to check for abnormal white blood cells. You’ll be given a local anaesthetic injection to numb the area. You may also be offered a short-acting sedative to reduce any pain or discomfort during the test.

The doctor or nurse passes a needle through the skin into the bone. They then draw a sample of liquid and a small core of bone marrow from inside the bone into a syringe. It can feel uncomfortable for a few seconds when the liquid and marrow are being drawn into the syringe.

The procedure can be done on the ward or in the outpatients department. It takes about 15-20 minutes in total but removing the bone marrow sample only takes a few minutes.

The doctors use the results of these tests to decide on which treatment is best for you.


Staging

The stage of a lymphoma describes how many groups of lymph nodes are affected, where they are in the body, and whether other organs such as the bone marrow or liver are affected.

Stage 1

The lymphoma is only in one group of lymph nodes or in one particular organ of the body.

Stage 2

The lymphoma is in two or more groups of lymph nodes but they are on the same side of the diaphragm (either above or below). The diaphragm is a sheet of muscle that sits just below your lungs.

Stage 3

The lymphoma is on both sides of the diaphragm (both above and below).

Stage 4

The lymphoma has spread beyond the lymph nodes to other organs, for example to the bone marrow, liver or lungs.

The stage usually includes the letter A or B. This shows whether or not there are B symptoms. For example, stage 2B means there are B symptoms and stage 2A means there are not.

Extranodal lymphoma

Sometimes lymphoma is found in parts of the body outside the lymph nodes. This is called extranodal lymphoma. It’s described by adding the letter E (for extranodal) after the stage number. The staging of extranodal lymphoma depends on whether the lymphoma started in an organ outside the lymph nodes (primary extranodal NHL) or whether it started in the lymph nodes and then spread somewhere else. If you have extranodal lymphoma, your doctor can explain to you how this affects the staging.


Grading

Non-Hodgkin lymphomas are usually divided into two groups:

  • indolent lymphomas (sometimes called low-grade lymphomas), which are usually slow-growing
  • aggressive lymphomas (sometimes called high-grade lymphomas), which grow more quickly and usually need treatment soon after they are diagnosed.

Most HIV-related non-Hodgkin lymphomas are aggressive. The two most common types are diffuse large B-cell lymphoma (DLBCL) and Burkitt lymphoma (BL).


Treatment

Treatment depends on a number of factors, including:

  • the type of lymphoma
  • its stage
  • your general health.

The treatment of HIV-related lymphoma is very specialised. Your cancer doctors and HIV doctors will work together. You may be treated in a hospital that specialises in treating both people with HIV and people with cancer, and you may need to travel some distance for this.

Once your doctors have your test results, they will discuss with you the treatment they recommend.

The main treatment is chemotherapy. You will usually have a combination of different chemotherapy drugs (combination regimen) and steroids.

If you have non-Hodgkin lymphoma, you will also be treated with a type of drug called a monoclonal antibody and you may be given radiotherapy.

Early-stage Hodgkin-lymphoma is also sometimes treated with radiotherapy.

Treating the HIV when you have lymphoma

Treating the HIV is an important part of treating the lymphoma. You will be advised to start or to continue taking highly active antiretroviral therapy (HAART). This helps strengthen your immune system and improves the chance of treatment for the lymphoma working. Your doctor may need to change the antiretroviral drugs that you've been taking, as some of them can react with chemotherapy. You should discuss this with your HIV doctors.


Chemotherapy for HIV-related lymphoma

Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. The type of chemotherapy used will depend on the type, stage and grade of the lymphoma as well as on your general health.

Chemotherapy is usually given into a vein (intravenously).

Chemotherapy for HIV-related non-Hodgkin lymphoma

The two most commonly used chemotherapy treatments for HIV-related NHL are the R-CHOP and RCODOX-M/IVAC.

RCHOP chemotherapy includes the chemotherapy drugs cyclophosphamide, doxorubicin and vincristine; a steroid, prednisolone; and a monoclonal antibody drug called rituximab (Mabthera ®).

RCODOX-M/IVAC includes the chemotherapy drugs cyclophosphamide, vincristine, doxorubicin, methotrexate, ifosfamide, etoposide and cytarabine. You will also be given a monoclonal antibody drug called rituximab (Mabthera ®).

With some types of NHL there’s a higher risk of lymphoma cells going to the brain. If you have a lymphoma like this, you may be given additional treatment to reduce your risk. This may involve having chemotherapy put into the spinal fluid, called intrathecal chemotherapy. It’s done in a similar way to a lumbar puncture; before removing the needle, the doctor puts a small amount of liquid chemotherapy into the spinal fluid. Intrathecal chemotherapy can also be used to treat lymphoma that has already spread to the brain.

Chemotherapy for HIV-related Hodgkin lymphoma

Hodgkin lymphoma is often treated with the ABVD regimen, which includes the chemotherapy drugs doxorubicin, bleomycin, vinblastine and dacarbazine.

Chemotherapy involves a number of cycles of treatment. A cycle usually consists of a few days of chemotherapy treatment followed by a rest period of about 2-4 weeks.

Side effects of chemotherapy

Different chemotherapy drugs have different side effects. Your doctor or specialist nurse can tell you what to expect. You should always tell them about any side effects you have. They can give you medicines to prevent or reduce them if necessary.

The chemotherapy will temporarily reduce the number of CD4 cells. Your CD4 count will begin to increase again once you finish the course of chemotherapy. The chemotherapy shouldn’t affect the control of the HIV infection (viral load) as long as you are able to take the HAART medication.

One of the main side effects of chemotherapy is risk of infection. This happens because the chemotherapy temporarily reduces the number of white blood cells made by the bone marrow. People with HIV may already have a weakened immune system, so you will be closely monitored throughout your treatment.

You may be given treatment to prevent infections. This usually includes antibiotics and anti-viral medicines.

You may also be given injections to stimulate the bone marrow to make blood cells and increase the number of white cells in the blood. This involves having a substance called G-CSF (granulocyte-colony stimulating factor) injected under the skin (subcutaneously).

Occasionally the dose of chemotherapy may need to be reduced if the number of your white blood cells is too low.


Steroid therapy

Steroids may be used to help make chemotherapy more effective. They also help you feel better and can reduce feelings of sickness. Steroids prescribed to treat lymphoma are completely different from the kind of steroids used by some bodybuilders.

Steroids are usually given as tablets, but may also be given as an injection into a vein (intravenously). Possible side effects of steroids include indigestion, weight gain, restlessness, agitation and sleep disturbance.

Taking steroids with food can help reduce indigestion. Your doctor may also prescribe medication to prevent it. You should always tell your doctor if you have stomach pains while taking steroids. If you have difficulty sleeping, taking steroids in the morning with food may help.


Monoclonal antibody therapy

Monoclonal antibodies are drugs that recognise, target and stick to specific proteins on the surface of cells. They can stimulate the body’s immune system to destroy cancer cells. They are given as an infusion ‘drip’ into a vein.

Rituximab (Mabthera®) is a monoclonal antibody used to treat B-cell lymphomas. It stimulates the body to attack and destroy B-cell lymphocytes. Treatment with rituximab reduces the number of healthy B-cell lymphocytes, as well as destroying lymphoma cells. But, once the treatment has finished, the level of healthy B-cells in your blood will gradually recover.


Radiotherapy

Radiotherapy is the use of high-energy rays to destroy cancer cells, while doing as little harm as possible to healthy cells. Radiotherapy treatment is usually directed at specific parts of the body. It may be given in combination with chemotherapy.

People with early HL may have radiotherapy after chemotherapy. Radiotherapy may also be used to treat lymphoma affecting the brain (CNS lymphoma). Radiotherapy is sometimes given to help relieve symptoms such as pain.


High-dose treatment with stem cell support

A few people with HIV-related lymphoma have high-dose treatment with stem cell support. It is mainly used if the lymphoma comes back after initial treatment (known as recurrence).

Stem cells are blood cells at their earliest stage of development. All mature blood cells develop from stem cells. With this treatment, some of your stem cells are collected and stored. This allows you to have higher doses of chemotherapy to destroy the lymphoma cells. After the chemotherapy, the stem cells are returned by a drip (like a blood transfusion) to help blood cells recover from the effects of chemotherapy.

High-dose chemotherapy with stem cell support is a specialised and complex treatment. They are many side effects and complications. It’s not a suitable treatment for everyone. Your doctor will take into account your age and general health before advising you to have it.


Clinical trials for HIV-related lymphoma

New treatments for HIV-related lymphomas are being researched all the time. Your doctor might invite you to take part in a clinical trial to compare a new treatment against the best standard treatment. They will discuss the treatment with you, so that you have a full understanding of what it means to take part. You can leave a trial at any stage. You will then receive the best current treatment available.


Your feelings

Being diagnosed with a lymphoma can be very difficult, especially when you are already coping with HIV. Some people are diagnosed with lymphoma at the same time as finding out that they have HIV. It can be especially hard to cope with two new illnesses at the same time.

Everyone has their own way of dealing with their illness and the different emotions they experience. You may find it helpful to talk things over over with family and friends or your doctor or nurse.

You can also contact our cancer support specialists, or the organisations listed below, for more information and support.


Useful organisations

JAT (Jewish Action and Training)

JAT is a charity providing support and information on HIV and Aids to the Jewish community.

The Lymphoma Association

The Lymphoma Association gives emotional support, advice and information on all aspects of non-Hodgkin lymphoma. It has a national network of people with lymphoma, and local groups.

NAM

NAM provides information for people living and working with HIV and Aids.

Positively UK

Positively UK offers peer support services, including men's and women’s support groups, support groups for African people, counselling, a children and family service, and a helpline for people living with HIV.

Sexual Health and National Aids Helpline

  • Telephone: 0800 567 123 (daily, 24 hours)
  • Minicom: 0800 521 361 (daily, 10am–10pm)

This helpline provides free information, advice and counselling on all aspects of HIV, Aids and sexual health.

Terrence Higgins Trust

The Terrence Higgins Trust offers advice and information on all aspects of HIV and Aids, including counselling and support, health promotion and benefits advice.